Month: May 2017

I was in the doctor’s office again this morning . ( Big shocker there, right? Heh. ) No, with lupus and it’s many lovely cab-riding co-morbid leech-y partners sometimes weekly visits are a given . Sometimes even MORE than one visit per week is something you just say , “Meh.”, to, at this stage. I’ve been feeling puny as my Daddy says since last week. Without going into gory details, ( Oh, who am I kidding……..tossing the lunch monkey, making “the noise, that noise that shall not be named” as my teenage sons say in dramatic tones, general all -over pain, congestion of the size that back-hoes are needed to haul away, and just basically wishing I could curl under my floofy grey ginormo cover and dis- a-frickin- pear) . I finally gave in today and went, where my nurse Cynthia gave me the “look” , meaning ,”And you didn’t call me last week ‘WHY , YOUNG LADY?!?” Sigh. I know. ‘Cause I’m a moron. General knowledge at this point. Anywho, that tidbit of miscellany aside, she got me all vital-ed and everything , and I saw the doctor , who’s a peach. If you can say that about a jolly 260 pound linebacker sized gent who looks like he crushes coconuts in his spare time, but is really the kind of dude who takes his little girl to get her nails done Disney Princess style. I might say it, but maybe not , like to his face. 🙂

So turns out , I don’t ( By the grace of God , have the actual flu or strep , which IS going around, GAG me with a thousand troll toenails. ) I DO however have a severe sinus infection and probably like bronchial junk which goes with. ANYWHOOOO. So this next part requires kind of a backstory so that you can understand the following without me seeming like a total and complete loon.

See , I’ve been sick, for a very , very long time. Since childhood. And in the early 80s there was not a whole lot of knowledge about auto immune disorders, especially in children. I mean , there is still not a slew of things known about it now, even in adults and back then in children , you might as well have been an alien. So I was in the hospital. A LOT. Pretty scary experiences for a small child, you have to admit. But I was actually pretty lucky. I got to go to the hospital I was born in . And see the doctor who delivered me, and the nurses who worked there? I went to school with their kids, who were all my age. And our hospital was always a little bit old fashioned, and I remember it had the cast iron beds. The neat what people consider the “vintage” kind now. Our town was so small that the mayor was the X-Ray tech. The hospital cleaning lady , was my church’s secretary and roll taker. One of the nurses was the police chief’s wife. I’m named after the delivery nurse who helped my Mom in labor. I said all that to say this, one of the nurses there was always particularly close to me. She just seemed to always know when I needed something. I always tried to be brave, because I know being sick freaked my parents out. They didn’t know what was wrong with me , in those early days, and didn’t really have a way to pinpoint it. They just knew I was frail and in a lot of pain. But Cynthia, she just knew how to set it right. With me, AND with them. And she had this great laugh, when you heard her in the hall, you just somehow knew, no matter what things would be okay.

The funny thing is, that’s her that works in my local doctor’s office now. THAT Cynthia. While I was sitting in exam today , waiting to get my injections for my infection, I heard that laugh, and started to tear up. I couldn’t help it. She comes in with the shots all ready to go, and looks at me. I told her, ” I need a hug. When I heard you in the hall laughing, it brought back so many memories of cast iron beds, and scary days, being afraid, and not knowing what was going to happen , or even if I was going to make it. But I’d hear your laugh in the hall, and suddenly I’d just know , ‘Cynthia’s coming. It will be okay now. ‘ ” And then I couldn’t speak. I was just hugging her and bawling my eyes out. You just don’t know how much stuff like that means to someone.

She told me , that she had needed that today. So I was glad I said it. Oh how blessed I have been to have had my care team from PCH and Mercy Medical. My hometown. And if you have people like that in your life, tell them! Tell them now. Don’t wait. You don’t find them everywhere, trust me. I have trusted these people with my lives , countless times, and they have earned my gratitude, my heart, and yes, I tell them without shame, before it is gone, the time has passed, and they aren’t here anymore. I tell them, ” You mattered to me!! I love you!”

Níl mé ceart go leor
Children live on the street.
Mir geht es nicht gut
The politicians play by their own rules.

I au I Ka Moana
We've forgotten , "Do unto to others ."

אני לא בסדר
We turn a blind eye to those we could help

e kore au e ahau paiThe Golden Rule is not , "He who has the gold , makes the rules. "
Sina sawa
Love is not arrogant , or rude.
P.S. The "four words" are , "I am not okay." in many different languages from around the world.
And he said unto them, Go ye into all the world, and preach the gospel to every creature. Mark 16 :15
Just something that was on my heart today.

I’ve always been fascinated with eyes. From the time I was small , and realized I could draw , I was determined to get the shapes and forms of eyes realistically captured on paper. Human eyes, animal eyes. I can’t remember a time in my life when I didn’t love looking at people’s eyes when they spoke. It seemed to me they spoke volumes about what it was they were really saying. I never really realized until I was grown that although a person could be telling you one thing with their words, that their eyes could be telegraphing something quite different.

I guess there’s quite a whole psychology behind that kind of thing now, and educated folks who know about that kind of stuff would say I probably have some kind of a complex or something. That whole Nietzsche quote , “And if you gaze long enough into an abyss, the abyss will gaze back into you. ” , and all that jazz. I’m not so sure that’s what old Friedrich meant. I’m more inclined to believe in the Biblical standpoint of Matthew 6 :22 “The light of the body is the eye: if therefore thine eye be single, thy whole body shall be full of light.”

So I guess, really it’s my unconscious way of gauging whether I like you or not. My mother has always joked that I have an instant people -radar . Either I like you or I don’t. First impressions, ALWAYS. And I think it’s the eyes. I can just kind of tell , ” Yep. Me and these peeps , we’re gonna’ be friends. Or these people are shady, I don’t like ya’ now, and I ain’t gonna’ like ya’ later. Maybe that’s wrong of me. I’ve always tried to trust my intuition in those kinds of things, and in most cases it’s served me well.

Besides , eyes are quite beautiful , don’t you think? The colors, the shine, the slight twinkle that says they know something that you don’t. And that maybe, just maybe if you look long enough, they might let you in on the joke.

Very young eyes, eyes full of life, and of course my very favorite , the eyes of the very old. The things they’ve seen and the secrets they hold. If I could have a camera to capture it all. But of course , the films are theirs. Memories only they choose, to keep wound on the reels of the 8mm cameras of their minds. And rightfully so.

Because there is a word for this soul gazing ~ Opia ~ The intensity of looking someone in the eye which can feel simultaneously invasive yet vulnerable .

Perhaps Nietzsche WASright in a sense, but it’s not an abyss at all; it’s a crossing, a sharing of sorrows , of joys , of things unsaid, and songs unsung, and a time passed between two like souls.

Fair warning. I like to give fair warning. If a post might seem long, or scatter-brained, or even if some of the topics or wording might seem offensive to some. I had no idea until just a few years ago that even the very discussion of illness is considered offensive to some. There are things called content warnings, and trigger warnings. I don’t really do that here. It would be great if the world were all cotton-candy and lollipops but it’s not. Unfortunately, in the real world there is potential for your feelings to get hurt. So I said all that to basically say this post might be long, and you can feel free to leave, I won’t be offended. So onward, and upward! 🙂

Anywho, This month , May, is Lupus Awareness Month. For those of you who follow my blog, you know that I have lupus, and have had for about 20 years now. I run a lupus support site on FaceBook called Lupus Sucks ! Lupus Support and Humor . I’ve run it about 5 years now, and have about 9,100 followers.

That’s not to toot my own horn , by any means . It’s really rather to toot the horns of the amazing people on my page. My BUDDIES I call them. They’re amazing. They rally around each other. They grant words of encouragement. They lift us up when we’re in the hospital , offering ways to get by when we’re having wretched stays in those most horrid of “Hiltons” 🙂 We’re able to help each other find doctors, share tips on what works best for exercises on already hurting bodies, and most of all , my favorite part , is find humor, yes, I said find humor in this crazy life that got chosen for us. By God , or the Universe, or Fate, or however you decide the great wheel of life chooses these things.

I’ve often told people if I hadn’t been able to laugh I’d have died a long time ago. I hope that I have been able to grant some small bit of that humor to someone else. It really is okay to laugh. I decided a long time ago , I was not going to let this crazy disease and all it comorbid compatriots to steal my joy.

Which got me to thinking about May being Lupus Awareness Month, and all the things that come with it. I’ve been trying to do research about Lupus Awareness Month. When it started, WHO started it? Why is it in the month of May? Why is our symbol the butterfly? WHO made these decisions? Was there a committee formed? Who was on the committee? Did the people on the committee have lupus? Who decided that purple was a good idea for our color ? Seeing as how this is the list of disease that use purple or some variant of it for THEIR awareness

Testicular Cancer. There is debate about the color for testicular cancer awareness and ribbons, however orchid, a purple/violet color, has long been recognized as the official color for testicular cancer.

Are we really using the MOST effective color in our push to get people to be aware of the disease we are affected with? I have been to many sites over the last couple of days , looking for ways to get flyers with info, or ideas for spreading awareness in even my very small town. They offered no ideas , or assistance. No free printable information.

So I guess, I’m confused. Confused and a bit angry.

To be perfectly honest, I’ve never been angry that I have lupus. I’ve always looked at it like I got dealt a lousy genetic stack of cards. I was never angry at God. I didn’t rail at Him , saying , “Why me? ” But I find myself feeling angry at the lack of support from these for lack of a better word “mega-corporations”. These are the people who are supposed to be backing us up. With ideas, with materials to make flyers, with community research . They are the people that are supposed to make things HAPPEN.

On that note, did anyone ask YOU , did YOU want the butterfly for the lupus symbol?

If you could choose an animal , what would you choose , and why?

Did anyone ask YOU , if May was the best month for Lupus Awareness Month for you?

If you could choose a month, which one would you choose , and why?

Did anyone ask YOU how you felt about purple as a representative color?

Would you have chosen a different color , and if so , which one?

Why are there NO (Non-Profit) materials geared towards the average “LUPIE” ?

What kinds of materials do you think would grab the attention of the public?

(Meaning ~ Female , between the ages of 15 and 44~ in other words , we’re young and cool not some doddering bunch of people in nursing homes )

How do you best think we could attract the attention of the general public that we are trying to educate?

All that being said, I know we all have our struggles. With mobility, with being out in the sunlight, with fatigue, with emotional and stress issues. I know some of us have physical limitations which prevent us from getting out and dealing with the public. I know there are those of us who can’t speak on the phone, as it causes anxiety. I am not expecting anything to be done THIS May , but wondered if we might pool our ideas, and resources; creatively ( ideas, publishing , marketing) charitable, ( those with access to businesses who might help us with flyers, stickers , pins or buttons,etc. ) or simply working up a way to have it mentioned on a local news station. Please feel free to let me know any ideas that you have. And remember, our lupies are women between the ages of 15 to 44, but of course , the more people who are aware is even better.

I want so much to make a difference in the next year. And I BELIEVE that we CAN DOIT!! So maybe, just maybe it’s time WE